Ian and I have established a turtle-cleaning rhythm. Yep, we’re adapting. He takes the turtle out of the aquarium and puts him into a bucket. I wash out the aquarium and refill it. Since the turtle is aggressive after he’s first moved, instead of picking him up, we gently tip the bucket and slide Survive-E back into his aquarium:  one turtle touch per cleaning!

We’re even entering a bit of a routine regarding chemo. On the long day, we’re at the treatment center for 7-8 hours. The day starts with a blood draw from his port. (In case you haven’t googled images of it, the port looks a bit like a stack of quarters under his skin.) Once the blood work comes back okay, his oncology nurse starts his pre-chemo meds (steroids, fluids, etc), also through his port. Those drugs run for about an hour (if you are doing the clock math, they are done around 10-10:30AM). As each medication bag empties, the machine beeps.

We know when it’s time to start the chemo drugs because the nurse is specially gowned to protect herself from the drugs that are going into Ken’s body. The Erbitux takes about 2 hours, which means that it’s done around 12:30-1:00.

Sometime in the noon hour, a lady walks around with sandwiches for the patients. Although they occasionally have extras for family, I bring my own food, as well as snacks that Ken likes. Throughout the day, Ken can have water, juice and soda (no caffeine) from the patient refrigerator. It’s really important that he stay hydrated, as we learned after the first chemo session!

The Irinotecan and Leucovorin take 1-1.5 hours. After that, Ken gets a “push” of 5-FU and then the nurse loads up his pump with enough 5-FU to last an additional 48 hours. We’re almost done! Throughout this process, the nurse flushes his port multiple times to clean it. A second nurse checks the pump to make sure it’s been set up properly (they worry about chemical leaks and showed us how to handle any issues).

The pump  is small, about the size of a digital camera, but so intrusive. It makes a sound like a camera shutter about once a minute, as it releases 5-FU into the port. (Ken timed it.) After it’s connected, the oncology nurse gives us a large ziplock bag for the visiting nurse who comes to the house on Saturday afternoon. The bag has flushing syringes for the port and protective gowns and gloves for removal of the pump. During the first chemo appointment, we also got a large medical waste garbage can. When that fills up, we call the home care agency and they stop by to collect it.

Time to go home! We’re worn out and for the next four days, Ken will deal with nausea, sleeplessness, chills, sweating, and anxiety. His appetite will be limited and he’ll be physically exhausted. By Monday, he’ll start to feel a little better, though almost too tired to eat anything by day’s end. Each day he’s a little better, a little less tired.

And then, before you know it, Thursday will arrive and we’ll be back at the treatment center for the “short” chemo session.

On Sunday, I burst into tears during a completely normal, albeit cancer-focused, conversation with my son. Unfortunately, we were in the middle of a restaurant at the time. I literally ran into the restroom and hid in a stall until I was calm. Then, after I splashed water on my face, I realized there were no paper towels. Yes, lady in pink who was staring at me, I WAS trying to dry my face with the hand dryer!  ¯\_(ツ)_/¯

We’ve been talking about The Death of Ivan Ilyich, an uplifting (sarcasm!) little Russian novella that tells the story of a sick man who, as his illness progresses, becomes more and more isolated from family, friends, community. It never really resonated with me but now that we are in the midst of our own health event, we are both connecting with the protagonist.  You shouldn’t be put off by my description, either. Tolstoy’s book is wonderful; it’s just that it’s also Russian literature. If you are hoping for … well, HOPE, you might want to pick a different book. Maybe, re-read A Christmas Carol.

The thing about serious illness is that it removes passion for every day life: many things become irrelevant (bickering with the neighbor who shovels snow onto our part of the sidewalk, walks with the very eager 2-year-old pitbull). Some of that is good; the neighbor is 35 years older than I am. Since I’d willingly shovel his sidewalk anyway, it really IS irrelevant if he practices poor shoveling habits. Other things are more difficult: we want Ken to spend time with the kids but he tires easily. A friend suggested video games and that’s been remarkably successful. Our youngest is also reading to Ken, which is good for both of them. It takes more concentration though and sometimes that’s in short supply (thank you, chemo brain!). Walks with the eager, though very well-behaved, pitbull take more energy than is currently available.

The most difficult is the emotional aspect. This was a “low-coping” week for both of us. My resilience bucket was mostly on empty (see the children’s book, How Full Is Your Bucket? if you aren’t familiar with the concept). We know how to be sad together (happy together is EASY) but usually, my bucket refills quickly which helps me to lift Ken’s spirits when he hits a rough patch. This week, though, my bucket has mostly been empty, which is why I found myself crying in the bathroom at Eat’n Park!

 

Cancer treatment is a waiting game. We go to chemo and then wait anxiously for the next chemo treatment. We were mentally preparing for round two all week. Ken wanted today to arrive quickly because at least on chemo days we’re actively fighting the cancer. We know the chemicals are working long after the treatment day ends, but we both feel powerless, except when he actually has chemicals dripping into his body.

This week, we were supposed to have Avastin added to his drug cocktail, but one of Ken’s tumors is still bleeding a little. Since Avastin causes bleeding, it’s out of the line up.

There’s good news, though. According to the doctor, Ken’s got “good cancer,” which made us both laugh (the medical staff didn’t really get why that’s funny). Apparently, good cancer is non-mutated and responds well to Erbitux. So, instead of Avastin, they are giving him Erbitux (weekly). Like all cancer drugs, Erbitux comes with a frightening list of possible reactions and side-effects. He received a big IV bag of Benadryl just in case he is allergic. I’m watching for hives and difficulty breathing but he’s happily snoozing right now, totally knocked out by the medication.

The Oncology Pharmacologist thinks the doctor will want Ken to be on Erbitux for 2 months before the next PET/CT to check the tumor progress. Ken has the benefit/curse of being able to see some of his tumors so we’ll be watching them as well. The largest tumor is still growing, which is stressful, but it’s early days in terms of treatment.